Down’s Syndrome Regression Disorder

Stephen Kinnock Excerpts

Tuesday 8th July 2025 Westminster Hall

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Sir Jeremy. I thank and pay tribute to my hon. Friend the Member for Thurrock (Jen Craft) for securing this important debate. I commend her for the work she is doing to raise such an important issue, and for sharing her personal experiences in a moving and powerful way, as a parent of a child with Down’s syndrome. I also pay tribute to all the hon. Members who have spoken so powerfully and movingly in this debate.

Last week, we launched our 10-year health plan for the NHS, which creates a new model of care, fit for the future. The neighbourhood health service will help to improve life outcomes for disabled people, including people with Down’s syndrome, by providing access to holistic, ongoing support that is closer to home. Through local commissioning, we will ensure that neighbourhood health services work in partnership with family hubs, schools, nurseries and colleges to offer timely support to children, young people and their families, including those with special educational needs and disabilities.

We have heard powerful testimonies about the challenges associated with Down’s syndrome regression disorder, both for people with Down’s syndrome and for their families and carers. As we have heard, regression describes the loss of previously acquired cognitive and developmental skills in an individual. Down’s syndrome regression disorder is a specific, rare type of regression, which usually presents in adolescence or early adulthood.

People with Down’s syndrome can live full lives pursuing their personal interests, taking up employment, and living independently. However, regression can have a devastating impact for people with Down’s syndrome; the loss of developmental skills can affect daily living, language, motor abilities or social interaction. We know that symptoms can often be overlooked, or misdiagnosed as dementia. We have heard that further awareness and understanding of the disorder is needed. Like with other support for people with Down’s syndrome, it is important that care for regression disorder is personalised and takes into account the specific needs of the individual.

As my hon. Friend the Member for Thurrock so clearly explained, there is currently limited understanding of Down’s syndrome regression disorder. We know that experts in the field have looked into regression and developed a position statement on regression in adolescence and early adulthood experienced by people who have Down’s syndrome. This includes recommended healthcare actions for people with Down’s syndrome who show signs of loss of skills or cognitive decline.

There has been some academic research into regression, but there is still much to learn about this disorder and why it happens to some people. We understand that many factors may come into play in causing regression, but the specific underlying cause of Down’s syndrome regression disorder is still unclear. Through its research delivery arm, the National Institute for Health and Care Research, the Department of Health and Social Care welcomes high-quality funding applications from researchers seeking to better understand this condition, and to inform enhanced management and care.

More broadly, patients will receive the most cutting-edge treatment years earlier than planned under the Government’s 10-year health plan, which will speed up clinical trials so that the UK becomes a hotbed of innovation. Millions of people will now be able to search for and sign up to life-changing clinical trials via the NIHR Be Part of Research service on the NHS app, allowing patients to browse and find the trials best suited to their interests and needs.

The Government are committed to improving life outcomes for people with Down’s syndrome, including those who have regression disorder. In order to achieve this, it is vital that we raise awareness of the needs of people with Down’s syndrome. We know that despite many positive developments, such as increased life expectancy, people with Down’s syndrome do not always receive the care and support they need to lead the lives they want to lead in their communities.

[Ayoub Khan]

First, I apologise to the hon. Member for Thurrock for using clumsy language—I meant no discourtesy. We have been discussing PIP and how it could impact many people who require care. Regression can happen very suddenly for people with Down’s syndrome, which is concerning because we are still looking at research and the methods for getting a final determination. Will the Government incorporate something, such as financial care packages and so forth, to deal with the additional care required by those individuals?

[Stephen Kinnock]

As the Government have made clear throughout the debate on reforming the welfare system, those who need to be supported and protected will be supported and protected, so I can reassure the hon. Gentleman on that point. There is clearly a lot of work to do through the review that will be led by the Minister for Social Security and Disability, my right hon. Friend the Member for East Ham (Sir Stephen Timms). This will be an important part of his work.

Through the implementation of the Down Syndrome Act 2022, we will improve awareness and understanding of the needs of people with Down’s syndrome and how to meet them. The Act requires the Secretary of State for Health and Social Care to give guidance to relevant authorities, including local authorities, education and housing services, on the appropriate steps they should be taking to meet the needs of people with Down’s syndrome in exercising their relevant functions.

Work to develop the statutory guidance under the Act is being taken forward as a priority, with a view to issuing it for consultation in the autumn. The shadow Minister, the right hon. Member for Melton and Syston (Edward Argar), asked about that. We looked at publishing it over the summer, but we received feedback from stakeholder groups that parents in particular are often busy with their kids over the summer, so it is better to wait until the autumn. That is what we are doing, and we will be publishing it as soon as the school holidays are over.

Officials have considered a range of evidence and engaged extensively with sector partners to inform the development of the guidance. This includes a national call for evidence, which received more than 1,500 responses. A summary report of its findings will be published ahead of, or alongside, issuing the draft guidance for consultation. Based on what we were told during the call for evidence and our subsequent engagement with sector partners and experts, a needs profile has been developed setting out the different needs of people with Down’s syndrome, including people with Down’s syndrome regression disorder. We intend to publish the needs profile paper alongside the draft guidance this autumn to ensure full transparency.

The guidance itself will raise awareness of the specific needs of people with Down’s syndrome, including health needs such as unexplained regression. The guidance will also set out practical steps that relevant authorities should take to meet the needs of people with Down’s syndrome.

We have made significant progress in developing the guidance. We are working closely with relevant Government Departments and sector partners to ensure that it is helpful, accurate and fully reflective of the latest developments in Government policy. Crucially, that engagement has involved people with lived experience of Down’s syndrome, as well as organisations that support people with Down’s syndrome, other conditions and/or a learning disability.

On 4 June, I met the all-party parliamentary group on Down syndrome and provided an update on the latest progress on the guidance. We discussed how we can ensure that the guidance is as effective and impactful as possible. The latest version of the draft guidance, which has had input from all relevant Government Departments, was also shared with sector partners in June for their feedback.

Officials are reviewing that feedback ahead of issuing the guidance for consultation this autumn, which will provide a further opportunity for individuals and organisations to share their views. We remain committed to delivering high-quality guidance that supports improved outcomes for people with Down’s syndrome, while bringing wider benefit where possible. To support implementation of the guidance, NHS England published statutory guidance on 9 May 2023 requiring that every integrated care board must have a named leader for Down’s syndrome.

The 10-year health plan will ensure a better health service for everyone, regardless of condition or service area. We want disabled people’s access to and experience of healthcare services to be equitable, effective and responsive to their needs. Significant engagement took place as part of the 10-year health plan’s development, and informed the final plan. That engagement included a roundtable on learning disability, at which we heard directly from people with Down’s syndrome about their experience of the NHS. We also received contributions from organisations that support and advocate for Down’s syndrome across the health and social care sector.

The 10-year health plan sets the vision for what good, joined-up care looks like for people with a combination of health and care needs, including people with Down’s syndrome regression disorder or other disabilities. The neighbourhood health service will support disabled people to be more active in the delivery and management of their own care. That includes increasing uptake of personal health budgets, which provide individuals with greater choice and flexibility on how their assessed wellbeing needs are met. We know that there are many disabled people, including people with Down’s syndrome, who want to work. The 10-year plan will break down barriers to opportunity by delivering the holistic support that people need to access and thrive in employment.

A number of hon. Members raised questions about training. The guidance will raise awareness of the specific needs of people with Down’s syndrome, including people with regression disorder. We understand that training is an important part of that picture. Under the Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, providers registered with the Care Quality Commission must ensure that staff receive appropriate professional development necessary for them to carry out their duties. Specific training on learning disability and autism, appropriate to the staff member’s role, is also mandated under the Health and Care Act 2022. We expect that providers should consider whether specific training on Down’s syndrome is required for their staff.

Members also raised questions about funding research into regression disorder. The Department funds health and social care research through the NIHR. The NIHR welcomes funding applications for research into any aspect of human health and care, including Down’s syndrome regression disorder. Such applications are subject to peer review and are judged in open competition, with awards made on the basis of the importance of the topic to patients and to health and care services, value for money, and scientific quality. That enables maximum flexibility, both in the amount of research funding that can be awarded to a particular area, and in the type of research that can be funded.

The NIHR works closely with other Government funders—including UK Research and Innovation, which is funded by the Department for Science, Innovation and Technology and includes the Medical Research Council—to fund research to improve care and prevent poor health outcomes for people with Down’s syndrome.

The shadow Minister asked a couple of specific questions. I think he mentioned Down’s Syndrome Association-supported research by Cambridge University, and the trials in the United States of America. If it is okay, I will write to him on those points. I am not in a position to address them today.

I hope I have addressed the points raised by hon. Members in this debate. I end by thanking all those who have committed so much time and effort to supporting the development of the guidance under the Down Syndrome Act. We are grateful for the invaluable input that individuals and organisations continue to provide on the draft guidance. Their feedback has been, and is, instrumental in helping us to ensure that the final guidance has maximum benefit. Officials will continue to work with sector partners to ensure that the communities they represent are aware of the forthcoming consultation and can share their views.

I once again thank my hon. Friend the Member for Thurrock for securing this important debate, and for all the incredibly important work that she is doing in this area. I also thank all hon. Members for their contributions.